Neuropothy

Here it is Saturday, and my feet aren't tingling.  that's great.

The neuropothy had gotten  much worse from the 2 weeks of velcade i.v. 

This is the reason Vanderbilt wanted me to get the injection instead of the i.v.  The shot causes less neuropothy.

I guess they're right!  :)

First Injection

This morning, Friday, the 28th,  was my first velcade injection.

Of course, when I got to the office, the right hand didn't know what the left hand was supposed to do.  I wonder if they are so disorganized with other patients, or is it just me?

After waiting awhile, I went into the infusion room.  I sat down in the recliner and waited.  The guys who work there are pretty nice.  One guy, Mike, grabbed an i.v. bag and came over to me, ready to start the i.v.

Yikes! I thought.  Doesn't he know I'm supposed to be getting a shot?!  Of course he doesn't, he never looked at my chart before he came to help me.

I explained everything and another guy came over with the needle to give me my shot.  he made no offer to give me any privacy.  I asked if he  would pull the curtain, since the shot was to be given in the belly.  He said he could or we could go into a little side room.  We went into the side room.  I lifted up my shirt and pulled down my underwear a little. He had to go below the belly button. It took longer than I expected but didn't hurt. And that was that.

This evening I noticed that the injection site was all red maybe a 1/2 inch to an inch in diameter. I didn't hurt or itch or anything.

 

June 25th

Had an appointment with my oncologist, Dr. I___ this afternoon. 

I didn't learn anything, as usual.  It was basically an appointment so that he could write the orders that the doctor at Vanderbilt requested.

My velcade is now to be given as an injection and he ordered a biospy.  Vanderbilt ordered injection because the chances of neuropothy are lessened with the injection as opposed to an I.V.

That was it.

Horrible Week

June 16th, I was putting lotion on my neck and the gland on my left side felt tender and a bit swollen.  I thought, hey, this would be a good time to try my red root tincture!  Out it came and I took one teaspoon.  This was my first time taking red root.

That night at about 6:00 pm, I started having diarrhea.  And boy did I have diarrhea!  Explosive and every hour on the hour even through the night.   This ended up lasting till  Tuesday morning.  

 I stopped eating because I figure nothing in, nothing out.  Eventually my guts had to be empty and the diarrhea would stop. It kept on til I was effortlessly expelling pure liquid stuff.  I was extremely fatigued and so weak.  My chest hurt and I was short of breath if I did anything and I mean anything.

I started eating the BRAT diet on Tuesday and the diarrhea finally stopped on Wednesday.  I still was feeling very badly though and I thought I should call Dr. I's___ office after reading on the internet that I was having velcade side effects.  Mark said no, that that was to be expected and just try to cope.  So I did.

All the time though I am wondering if it was the red root.  I'd never taken it so I didn't know what it would do to me.

Here it is Saturday and I am feeling much better.  I am wondering if I feel better because I took my steroids this morning.  They always get me hopped up.  Hopefully, by Tuesday, my next oncology appointment, I'll be back to my old self.

Hair

I don't know why I have the opinion that I am gonna be the exception to the rule.  Why do I think I'm gonna escape all these side effects?  I am always stunned to have them happen!

My hair is coming out by the strands full.  When I run my fingers through my hair, five or six strands come out.  Oh, big deal, you say.  Well, I can do that 10 -12 times in a row with the same results.  Multiple that and see what kind of effect that has on some ones hair.

I could see the writing on the wall.  Hair cut here I come. Being the cheap skate that I am, I headed off to Walmart for the cut.  A nice, but too talkative black girl cut my hair.  I got a short, manly cut.  Yay,  Yes I am being facetious.  I hate the hair cut.  I hate looking like a man.  I know the Lord understands I did not do this out of rebellion or a desire to be like the women of the world.  I get that.  But I still hate it.

 Here I am in all my stark ugliness.  Makes me soooooo glad I got my wig.

Additional Required Tests

Concurrent with everything that was going on, I was required by the insurance company to have certain other tests done before they would approve the SCT.

I was required to get a TB test, have my teeth cleaned & any dental work done, have a mammogram, pap smear and EKG. 

So far I have had all but the EKG, because that's gonna be done later at Vanderbilt.

May 29th I went to the dentist.  I just called one in my hometown and went to see him.  Nice office, everything was clean and orderly.  I waited for about 45 minutes before going back to the exam room for ex-rays.  After the ex-rays, the tech examined my teeth and called the dentist in too look at my ex-rays.  Well, Dr. Edenfield looked at my mouth for a whole two minutes, felt my neck and said I didn't need anything done.  Mind you I hadn't been to a dentist in ten years!  I think he just realized that with no insurance, I wasn't a good candidate for money- no insurance company to outrageously bill.  Fine with me.  I didn't want to be  there in the first place.

He left and I left with an RX for antibiotics and an appointment for two days later to actually have my teeth cleaned.  I was to take the antibiotic, amoxicillian, I think, an hour before my appointment.  They were afraid

with the low white cell count about giving me an infection. 

I went back that Friday and had my teeth cleaned.  The tech was very nice and did a good job.  My bottom teeth were now as white as my top dentures.

June 3rd I went in for my TB test and pap smear.  The TB test, of course, was no problem.  The pap smear, well, that's just down right embarrassing, but I got it done.  Now I had to wait for the pap results.

Bright and early, 8:00 am., I went in for my mammogram.  That was a piece of cake.  I think it took all of about 15 minutes.  The tech was a nice lady and they had a nice little dressing room.  I striped from the waist up and  put on a gown had the test and went home.  No pain, I guess that's the only perk with having small boobs.  At least that's the only perk I know of.  I always wanted bigger boobs. She said good news you get a letter, bad news, we call you.  ok so home I went to wait on that.

A week later I got a letter!  Nothing found on the mammogram.  Yippie!.

Two days ago I got a letter from my Primary Care Physician.  Abnormal pap results.  Got a panicky feeling.  Called the office and she gave me a number for a On/Gyn.  I go see her on July 2nd.

 The thing about these additional tests, any one of them can disqualify me for the SCT.  They also delay everything thing while I am getting treated for them.  So far the only hold up is the pap smear.  We'll see what they want to do about that.  Treatment of course.  They never seem to let you watch and wait.

Velcade 2,3,& 4

My next velcade first cycle of treatments were on June 10, 14 & 17.  My cycle  was 2 weeks of treatment and one week off. Meanwhile, still taking the revilmid and dex.

The treatments went off without a hitch.  My second treatment, on June 10th, I refused the kytril.  The nurse looked at me like I was nuts, but complied. I told him I wanted to see how bad the nausea was and if I could handle it.

A half hour later we were on our way home.

Turned out I was sorry I had refused the kytrile. I got sick to my stomach and wasn't very happy about it.  I decided from then on I take the medicine.

On the 17th the nurse suggested I get a port put in to make it easier on me getting stuck for the I.V.'s.  I said ok, I'd do it.  Well, they were supposed to take care of getting the order to have that done.  It never happened.  After talking with Vanderbilt, I'm glad it didn't.  They were under the impression I was getting the injection!  They want it done as an injection.  So now I have to get with Dr i and get that set up.  Vanderbilt said there is less chance of getting nuropothy with the injection.  I'm all for that. 

I guess that's the trouble with having doctors in Nashville and Knoxville.  Communication isn't always what it should be.

Velcade

Friday June 7th, I went in for my first velcade treatment.

I felt like I was walking into a Frick and Frack movie. The right hand definitely did not know what the right hand was doing! They knew I was coming, but that was about it. They got just about everything else wrong. The nurses had the wrong medicines qued and the wrong application. 

They had doxil listed list as one of my meds and they had that I was to receive it by injection. Well, I remember when I walked in, I asked the nurse how long I'd be there for the shot. He said I wasn't getting a shot, but an I.V.  So I had a seat and waited....and waited...and waited.  This whole thing was supposed to take approximately 30 minutes, when I finally left, I had been there 2 hours!

After phone calls and protests from me that I was not taking the doxil, Dr. I's nurse came over and got everything straightened out.

The nurse started the I.V. Of course, it wasn't easy. He said my veins were too small. He did get it on the first try though, so that was good. I got an anti nausea medication added to my I.V. - kytril. I sat back in my recliner and watched a little tv and had some Sprite.  Why would they have that kind of a drink for patients? No bottled water, but several types of sodas and coffee.

Mark came with me but he didn't have any coffee. He just watched t.v.

2 hours later we left.

Nashville

Thankfully, Mark's last day of vacation was the day I needed to be at Vanderbilt in Nashville! My how the Lord provides!

We were up with the birds that morning. I think it takes about 4 hours to drive there. And if you know me, you know I must be early! No exceptions! lol

So we got there early and drove around looking for some place other than McDonalds to have breakfast. No such luck, can you believe it?  It was about 6:00 a.m. and the few " breakfast " restaurants we saw weren't even open yet. We tried a jack n the box, no breakfast items, the Burger King wasn't even open yet! We drove around and drove around and guess where we had to finally settle? Yeah, that's right, McDonalds. Boy, were we disappointed! But we had our biscuit and drove on to the clinic.

We tried to sign in, but we were even too early for that! So the receptionist sent us over to the pulmonary department to wait. They must have opened first, I don't know. But we only waited like 1/2 an hour.  Went back with Mark and did my little lung function test. Mind you, I had just had the same tests a week ago with my pulmonologist from UT. Everything went well and the results were good. So off we went back to the reception area.

At the reception area, you sign in, get a stack of papers to fill out and get a beeper thing, then wait for your beeper to go off. It was a nice area, lots of seats, no magazines though. Mark waited a bit then found out where the smoking area was and took off for a smoke. I did see a lady with her daughter. The mom was reading a Bible. I wanted to go say something to her, I don't know why I didn't.  I filled out my paper work then started on my library book.

When the beeper went off, I went up and filled out more forms, payed my $55 co-pay for the office visit and  was sent to wait in the lab area.  I just got my bill today and that office visit that I paid $55 was billed to the insurance company at $500!

Shortly, my beeper went off again, meaning I was next in the lab.  Real nice black girl took my blood. She was very good! Got it on the first try and didn't hurt me! That's a winner in my book. She directed me to my next stop, upstairs to see the actual doctor.

I waited in that area quite awhile, as you can imagine. Pretty much standard waiting area. They did have coffee and granola bars which I thought was nice. It was about 11:00 I guess and we had no prospects of lunch in sight. I had brought a tote bag with some granola bars and cookies. So I munched on a granola bar while I waited.

Finally, they called my name. I went back and answered lots of questions with a nurse. Then back to the waiting room. I got called again. This time I saw the Nurse Practitioner. Ms Clifton. She was very nice, answered my questions in a way I could understand. When she was finished, the doctor came in. He was nice, too. He wanted my numbers down and he was so surprised that Dr I___ had me on revlimid for so long even though my numbers weren't coming down as fast as they should have. He even said Dr I___ almost had me on revlimid too long. That it gets to a point that you can't even have a SCT! I was horrified. I felt let down. I also felt glad that I was in effect "getting a second opnion" without having to offend Dr I____.  Secretly, I was very glad to be talking to another doctor about my case. He did tell me there were several other tests my insurance company required before I could get the transplant, like a mammogram, pap smear, ekg, etc.

When Dr. J_____ was finished, off we went to get a biopsy. Fun. No, not really.

We had about an hour before the biopsy and it was about 2:00 already. We still hadn't had lunch and we were getting snippy with each other and we were both so tired.

We made a bee line for the cafeteria.  It was a nice cafeteria, lots of delicious choices. I had a bbq chicken sandwich that came with cole slaw and something else, I forget. Mark had a Chinese platter. The food was good that both of us got.  It was too much, but it was good.

Ok, tummies full, dispositions better, we headed off to the biopsy waiting area.  I've had a biopsy before so I knew what to expect. It's not bad, totally tolerable.  Except this time.

The lady that did mine, I don't know what she was. I know she wasn't a doctor. She was awful. Nice personality, but awful at biopsy's!  She had to go in twice to get what she needed and that is not fun. I was very very sore for a month after that.

Now that i had a sore backside, it was time to get in the car for the 4 hour drive back home.

Ok, fast forward

Ok, let's fast forward to a month ago 'cause I'm having trouble remembering everything and putting things in order.

A month ago at my last visit, Dr. I___ said he thought my numbers were good enough for me to see the doctor who would handle my stem cell transplant.

WoooHooo!

SO, I left the office with an appointment with Dr G________.

A couple days later, I got a phone call  from my insurance company telling me that I would not be covered at the facility where Dr G____ works. Uh oh! But she said if I chose one of the other facilities she would tell me about, I would be covered. Ok, no brainer, let me know which facilities I can go to.

She gave me about 3 options and I chose Vanderbilt in Nashville.

Now I had to get on the phone and cancel with Dr.  G___ and schedule with a doctor at Vanderbilt. Of course, Dr. G____'s office tried every which way to get me to stay with them, but no way could I create a huge medical bill for nothing!

I checked Vanderbilt's website and Mark and I picked Dr J_________ and my appointment was set for May 24th.

My Face

I want to show you some pictures of how I think I've changed.  I don't know when it happened. I just woke up one morning and looked in the  mirror and my face was huge to me. I weigh the same in each picture.

Granted I'm fat. I know that. But you can see from these pictures how much the steroid has effected my face.

This first picture is of me and Mark and was taken in 2012. I hadn't started on the revlimid, steroid regime. And in this picture you can see my hair, which, will be no more.

Here I am with my wig on. I still have my hair, but it is coming out by the strandsful and you can see how fat my face is. This was just taken a week ago. 

I like the wig ( Mark picked it out) but my face looks awfully fat to me. Hey, but at least no more "bad hair" days! I've wanted a wig for as long as I can remember.

Side Effects

The only side effect I had on the revlimid was mouth sores and a HORRIBLE taste in my mouth.

The mouth sores were awful! Imagine your mouth, tongue, etc covered with a whitish film and sores. Not bleeding sores, just painful tender sores. It made eating difficult. The foods that were easiest to eat were cold and soft. Yeah, like ice cream. My husband and I drank alot of milkshakes.

I couldn't get rid of it and the doctor said nothing about getting rid of them. I experimented with different herbal washes for my mouth, treating it as thrush, but nothing really helped. I finally had to go to my primary care doctor because now it was hurting when ever I swallowed. She diagnosed it as thrush and gave me a RX for 'swish and swallow". Well, I used it once or twice. Didn't like the taste or the idea of taking it.

Then I got the brilliant idea to use plain Greek yogurt! I would get a spoonful of it and swish it around my mouth and hold it for a few seconds. Bingo! That got rid of it. Now I have a smoothie every morning with yogurt and kefir in it. 

 

The awful, metallic like taste I couldn't get rid of. It was more troublesome than the sores, believe it or not. I had absolutely NO taste in my mouth. Now for someone who likes to eat ( me!) that's a crime. In fact I actually cried about it. I actually said out loud to my family that if my taste doesn't come back I don't want to live. And I meant it. Really, I did. What's the point of eating if there is absolutely no taste? Oh, I suppose I could be "normal" and eat to live or view food as just a fuel and go on with my life, but I don't. Food is enjoying to me  and families fellowship around food. I wanted to be able to do that again.

I don't remember how long it took or when it happened but my taste came back. Yay!

Also the skin on my lips was peeling constantly and my finger nails split, peeled and broke off. My nails were a mess.

I think that's all the side effects I had.

I remember think how lucky I was and that this isn't gonna be so bad.

bronchiectasis

All this while my  bronchiectasis has to be managed. For awhile I was on oxygen when I did anything with "exertion". I also had a sleep test and found out I have sleep apnea. I got a cpap and an oxygen concentrator.  These were all covered by insurance. Thank must have been in the beginning of 2012. All those things helped very much. In fact, I bought my own brand new cpap machine off "craigslis"t from a sleep center that was going out of business and I bought the concentrator from the medical supply store that was delivering my oxygen.

As soon as I got on the dex (steroid) I was home free as far as breathing goes. I was breathing very well and not getting so wiped out going up and down the stairs here.

Now that I have my own respiratory equipment, my bronchiectasis is on the back burner. I use the cpap every night and I love it. It took me 2 weeks to be comfortable with it. It's just second nature now.

Treatment Time

The coming months were every 2 month appointments with my oncologist and regular blood work. We were taking the "wait and see" approach, at my request.

I got to the point where I asked Genevieve, (R.N.) to come to an appointment with me. Dr. I______ laid out the prognosis, treatment,etc. She told me to take the treatment. Dr. I______ also said that by the end of the year, as fast as my numbers were going badly, it would get to the point where he couldn't help me.

Gulp! Decision time. I remember crying in the office & he was so sweet, took my hand and tried to comfort me. Anyway, I said I would take the treatment.

That began my Revlimid regime.  

I had to sign some papers and answer some questions with the online pharmacy that would dispense it.  It came by Fedex the next day. I took 1 capsule for 21 days, then had 7 days off. Along with the revlimid, I took 40mg of a steriod, dexamethason. I hated the thought of "poisoning myself", but what choice did I have? Myeloma has no cure, it's only treatable.

The medicine cost me , with insurance, $30 a month. I saw on one of the papers that the pharmacy charged the insurance company over $10,000 for a one month supply!

Poison or not, I felt better now. I remember telling the Doctor I should have started treatment when he first suggested it. I would have too, had I know how much better I'd feel.

The revlimid and dex went on for 8 months.

I didn't get much info at my appoints really. Dr I____ never volunteered any solid information that I could absorb and I didn't usually ask any questions. I must have had the shortest appointments of his day. They usually went something like this:

Dr:  How are you feeling?

Me: good

Dr. Your numbers look good

Me: they do?

Dr: yes, I'm, pleased at what they are.

Then home I'd go to wait another month for my next appointment.

Telling Everyone

I got an appointment pretty quickly with the oncologist, Dr. I___. So I went home to digest what had just happened to me.

At first I wasn't gonna tell anybody anything. I usually went to all my appointments by myself and this appointment would be no different.

I couldn't have wanted a kinder, more sincere, doctor. Dr. I____ was everything my pulmonologist was not. Dr. I____ actually came across as caring if I lived or died. He was very encouraging. Of course he wanted to start treatment. But I was heavy into herbs at the time and wanted to take the "wait and see" approach. Looking back now, I am sorry I did that. Lots of months were wasted. He was ok with that. He never did force me to do anything or take any treatment.

When I got home, Mark never even asked about my appointment. I was hurt and stunned. At that point I thought why tell him, he doesn't care. I waited a couple days before I told him. I actually cried when I heard  the word "cancer" come out of my mouth. He kinda teared up too.

I was shocked, angry, in denial, you name it. I went through all the stages.

I remember saying "why me?"  I never drank, never smoked, never did illegal drugs and here I go and get cancer, in my blood no less. Your blood is every where! How was I gonna fight that? I was angry that Mark has been a 30 some year smoker, did all kinds of illegal drugs & was a drinker in his band days. He's healthy as a horse! Boy, I resented that big time!

It's hard to remember back so far, but I didn't tell my daughters anything yet. No need to worry them.

I remember thinking "why me" for awhile. Then thankfully, I got out of that mindset into "why not me?". And really, why not me? I'm saved I know when I leave this world I'll go to be with Christ. So better me than some unsaved person. Better me than one of my family members. And why not me, who am I that I think I should avoid the maladies of mortal life?

I don't remember crying much about it either.  I still don't cry about it.

I think a month must have gone by before I realized that I would have to tell my daughters. I told Jillian first. She took it ok I think. Of course, she is a master at keeping her feelings to herself. I didn't tell Genevieve for a few months after that because she lived so far away. I thought why put this on her when there is nothing she could do about it.I really struggled with telling my 14 year old grandson. He is such a sweet kid and I love him to pieces. Having experienced the death of both of my parents, I knew first hand how tore up he was gonna be. I really wanted to spare him. Maybe a month of so after I told Genevieve, I told Caleb. He was good about it. Accepted it. Didn't freak out. So that was good.

So now everyone knows and I'm glad.

The beginning

Hi.

I'm starting this blog kinda late, I guess, since I was diagnosed February 2011 and here it is June 2013. I had been keeping a pen and paper journal, but started writing things that were just too personal and so I quit and tore up the journal. I just didn't think it was fair to write some of my feelings and then maybe hurt someone and be gone and not be able to make it right.

I just want to document what I am going through, since I've not been down this road before. I certainly don't know what to expect.

Anyway, here goes....

In November 2010, I got a very bad chest cold. I was weak and in bed for weeks. I honestly couldn't even stand long enough to do the dishes.  I was coughing my fool head off. I just suffered through it because we didn't have health insurance. That meant no trip to the doctor for me!

In February of 2011, the cold finally got so bad that my breathing was scant and my throat was closing up. I was scared to death!  My husband, Mark, raced me off to the nearest walk in clinic. This wasn't your run of the mill clinic with doofus's for doctors. This was a nice, first rate, good reputation, clinic.

After a smattering of questions and tests, it  was off to the  E.R. They wanted to send me in an ambulance with O2, but allowed Mark to drive me if we promised to go straight to the E.R.  No problem! We had insurance by this time.

More waiting and tests and questions. Was admitted. More tests, questions and medicine. I was diagnosed with bronchiectasis. It never goes away. The goal is just to keep it from getting worse. Ok. I can live with that.

Of course I had a follow up appointment after being discharged. That's when the hammer fell.

My dolt of a pulmonologist who has no personality or bed side manner, simple said you need to see an oncologist there is something going on with your blood cells. He promptly left the office never to return. I just sat there. Stunned. Who expects to leave the pulmonologist office with a diagnosis of cancer?! Not me.

Finally the nurse came in and  directed me to another office where an appointment with an oncologist was made. 

And that's how I found out I had cancer.